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Fibromyalgia and abdominal pain - anyone else have this?

Posted , 19 users are following.

stsarah
stsarah

Hi all,

I wrote in the abdominal forum too. But I'm thinking some fibro buddies might give some insight.

I've had extreme exhaustion on and off all my life. Was diagnosed with PCOS, then Hashimotos, then Graves Disease and now most recently told that it was probably none of those things and is likely Lupus or Fibromyalgia.

In Feb I had campylobacter and landed in hospital for 5 days. I have experienced chronic pain all over my body since then. GP decided it was either lupus (liver issues involving surgery where part of my liver and part of my stomach was removed due to extreme infection - very small part of my stomach, quite a bit of my liver and my liver is thankfully fully grown again and normal. Had no issue with my stomach until Feb). Ever since then, I have what is considered chronic constipation (I can go 8-14 days without going to the bathroom!) but I've also had extreme exhaustion, hair loss, agonising pain in my shoulders, neck and hips and morning stiffness in my knees and fingers. I also have numbness/pins and needles at least once a day in my fingers or feet. I have chronic dizzy spells where I think I'm going to faint. Paracetamol does not help at all. Neither does Ibruprofen. Codeine & Ibruprofen mix tended to help a bit with the shoulder and hip pain but not much.

GP sent me to a rhuematologist in early August. He did a range of tests and said "none of the results point to any particular disease, you have markers for a number of diseases" and is continuing to do more blood tests. In August, he said it was likely a mix-message issue with my CNS, then earlier this month said it was fibromyalgia, then the next week said he never said it was fibromyalgia (he had even written it in my GP's report so we KNOW he said it was)

Anyway, two weeks ago I started getting extreme pain (like the campylobacter pain I had in Feb) in my upper left quadrant of my abdomen (doctor said likely small bowel), and landed in the emergency room and then hospital for 4 days. CT scan did not show anything wrong. Bloods all normal. Temp occasionally low-grade fever but mostly normal. Slightly low blood pressure but nothing to worry about. Eventually got sent home with oxycontin and told to come back to see gastroenterologist if it got worse.

It got worse. Gastroscopy has been done (last Wednesday) but I don't get the results until October 13 (surely they would have told me if it was bad right?!) Told to see my rhuematologist.

Rhuematologist (who by the way I think is hopeless, he doesn't listen and won't help me!) told me that fibromyalgia NEVER affects the abdomen. He told me I just need to see my gastroenterologist and make him sort that out as it's totally separate to what's going on with my pain (which by the way he refuses to treat - I am on 5mg endep for sleep but he said take paracetamol for pain - um why?! It does NOTHING!)

Pain has now moved to my lower right quadrant (above my pelvis diagnal to my belly button) as well as the upper right quadrant.

Has anyone experienced this with Fibromyalgia?! Or do I have something on top of the fibromyalgia I now have to worry about?!?!

1 like, 35 replies

35 Replies

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  • clara19942
    clara19942 stsarah

    Posted

    My how poorly you must feel you have and still are going thru it I have only had fibro agreed on in last few mths been putting things down to age arthritis liver prob don't really think they know still but did test pos to most points on body that fibro effect I have started random stomach pains toilet probe but no where near yours check out your meds for that you are on not affecting stomach and I know one of painkillers cause hair loss and ask for a referral to a different rheumy consultant other than that hopefully someone will sort your probe quickly knowing what it is your fighting /living with is half the battle x

    • stsarah
      stsarah clara19942

      Posted

      Thanks Clara. Yes I think a new RA is in order for sure!! Hope you find answers soon too!
  • JulieBadger
    JulieBadger stsarah

    Posted

    What a messed up message you have been given.

    ​I have Fibromyalgia and M.E. One of my severe symptoms is IBS.  For many years it would only show severe pain problems when I was particularly stressed about something. Now it is a feature of my everyday live partly due to reacting against some of the tablets I am on.  I take Colofac tablets 135mg twice a day. Just come down from 3 times but I was suffering from bladder problms due to the Colofac or the level of Amilipturine I am on (30mg per nit).  The IBS can cause extreme pain during bowel movement or because I can't have a bowel movement.  Due to not having normal bowel movement I can get sharp pains in the rib cage area between the breats due to blocking backing up (lovely thought).

    ​If you do suffer from IBS it might be interesting to discribe your situation to your Gp asking if that could be the cause of the pain you are describing?

    Hope you are having a better day to day.

    • stsarah
      stsarah JulieBadger

      Posted

      I've never been diagnosed with IBS but it would make sense!! Will talk to my GP and gastroenterologist about it. I really appreciate your care and encouragement!!
    • tia77
      tia77 JulieBadger

      Posted

      Hi JulieBadger,

      I have been on Colofac for years and also have had Fibromyalgia for about 15 years.

      May I ask what bladder problems you were suffering from?

      I am not sure if mine is related to menopause and Fibromyalgia. 

      I am also suffering from bad reflux since my new doctor ( my wonderful lovely doctor passed away) decided to wean me off my Livial which I take for extreme hot flushes, My doctor before who was a gynecologist before she changed to general practise told me I need to stay on this as long as I suffered so much from hot flushes as I could not sleep more than 1/2 hour at a time ever with that. Now I take 1/2 livial every 2nd day and feel like a zombie, all my symptoms have increased by 4 fold at least. 

      I get the very sharp pains in my rib cage as well as you describe. 

      I think I am so stressed as I am not sleeping and so hormonal. Not a good combination.

      To stsarah , I hope you feel better soon <3 >

    • JulieBadger
      JulieBadger tia77

      Posted

      Hi Tia77

      ​My symptoms started when I was in my teens with IBS.  Originally if I more stressed than normal I would really stink out the bathroom and pebble dash the toilet, the pain during this bowel movement would be horrible.  But get that eposode out of my system then I would be ok again, just weak.  I have only recently found out my sheep poo as I think of it is also due to the IBS.  Then over the last 6 months due to the ever increasing amount of medication I am taking for all of my M.E./ Fibromyalgia and Movement Disorder symptoms the IBS symptoms have been increasing.  Along with the previous symptoms I was then getting more frequent constipation of bowel movements and then bladder constipation.  The bowel constipation I use Micralax 5ml when needed.  In terms of the bladder constipation I was feeling that I couldn't empty the bladder.  I was having to strain internally from a variety of angles trying to be sure I was empty.  Unfortunately straining to empty my bladder and during a difficult bowel movement strains my heart (due to the M.E.). My heart which runs too fast about 83 resting goes upto 145 during a toilet session - I had a 24hr heart rate monitor on a while back.  Therefore as the bladder issue was everytime I need the toilet we are trying to reduce that knock on affect from the medication.  I have reduced the Colofac to twice a day for about a week now.  It has and hasn't improved things.  The emptying of the bladder has become easier most of the times = great. The pain doing bowel movements has increased = not so great.  We can still try the Colofac at 3 times and the Amiliptryine reducing from 30 down to 20, but I'm going to stay with this method for the month to see how it balances out. x 

    • tia77
      tia77 JulieBadger

      Posted

      Dear JulieBadger, what a dreadful time you have had sad  Thank you for sharing this. 

      I have also had IB since I was a teenager and was *officially diagnosed*  at about 22 or so .I noticed that even as a kid I had what they called a nervous tummy then. Mum had also IB and later a case of auto immunes rare colitis. 

      I really feel for you and wish you the best. I am also on Endep (Amiliptryline as other types made my IBS so much worse) currently on 10 mg. 

      Gentle hugs to you xxx

  • loxie
    loxie stsarah

    Posted

    Hi Stsarah, so sorry to hear of your multiple health issues, how worrying for you.  Have you investigated a gluten intolerance/Coeliac?  Reason I ask is I just had a neurologist appointment and during the discussion with him, he advised that some or even a lot of my symptoms could be gluten related - particularly exhaustion and abdominal issues but surprisingly also other pain - gluten intolerance can cause pain all over the body which I didnt know.  He also recommended I have my thyroid tested - as you have hashimotos you'll know about that issue.
    • loxie
      loxie

      Posted

      oh forgot to add, if you're having IBS/abdominal issues, the last thing you should be taking is codeine or anti inflammatories, as both are known to cause severe stomach problems.  Also, paracetamol affects the liver, please only take those if you are sure your liver has recovered.
    • stsarah
      stsarah loxie

      Posted

      Hey loxie,

      Yeah they tested for coeliacs when I had campylobacter in Feb as that was what they initially thought it was. I was put on a 3-day clear fluid diet when in hospital and the pain didn't subside at all - so not sure it's about gluten - plus thanks to my liver issues in the past I pretty much have a gluten free diet - focusing on mainly fruit & veg with a source of protein at each meal - I'm almost paleo except that I do occasionally eat pasta and bread (once or twice a week)

      Good thought though - I know gluten causes all sorts of issues for people!!

  • LUBYLOO
    LUBYLOO stsarah

    Posted

    Hi There, You certainly have been through the mill , I also have Lupus (SLE) and when they do the bloods they can tell what markers you have which defines your Lupus and to what degree .  Imagine 2 circles , my Lupus marker was at the bottom of one , and my RA was at the top of another .

    I recently attended my Lupus clinic which just happened to coincide with severe chest and rib pain , which having had breast cancer last year I was worried , but my Breast consultant said it was Muscleskeleton , so I was at a bit of a loss when I attended what it actually was . I must also tell you I have had Fibromyalgia for the last 15 years alwith my Lupus and other complaints , but I merrily soldiiered on , having said that these last months my Fibromyalgia has been in overdrive for no xtra reason I can think of . My chest pain follows the line of my windpipe and under my breast round to one side of my ribs .

    Unfortunately Fibromyalgia picks and chooses spots where tissue is and causes great pain and distress , and its very difficult when you are complex with lots of issues to actually seperate where the problem is . Like you paracetemol and ibrufien do not do anything for the pain , I am going to try voltorol gel tomorrow , as for your Dr saying fibromyalgia never effects the stomach , I dont see how he can say that as its still tissue ! , with the Lupus, flare ups happen and sometimes its a case of waiting for it to subside , given some of your symptons I would think its more likely to be fibromyalgia than your Lupus , but your blood markers will tell you wether its a bad flare up On a positive note if after your gastroscopy it was bad news you would not be kept waiting , it will take them that long to type !!!

    I hope I have helped a little , perhaps you just need a strong antibiotic , possibly if you have helibactor that would cause you pain !.

    However if you are not happy ask to see another RA consultant ,just keep badgering your GP and your consultant , and ask are your meds fighting to cause you the stomach pain , perhaps you need them to be changed .

    Hope you get a little relief for the rest of the dayxx

    I

     

    • clara19942
      clara19942 LUBYLOO

      Posted

      hi have you ever been diagnosed with corsochronditis its a pain in rib srea sounds simillar to where i hae mine its inflamation of cartiledge between ribs .
    • LUBYLOO
      LUBYLOO clara19942

      Posted

      Hi , mentioned that to my RA consultant after breast clinic said it was muscleskeleton in my T5 area on examination , as I thought it was the cancer again , thankfully it was not , however he did not confirm it was chronditis which having done a little research goes hand in hand with fibromyalgia , another condition to my never ending list of ailments !! ,but so much is tissue related , the body has a lot of it ., thanks for your help x
    • stsarah
      stsarah LUBYLOO

      Posted

      Thanks so much LubyLoo - I thought it odd that he dismissed the pain as not fibro when TWO gastroenterologist consultants at the hospital said they can't find anything so it's likely fibro!! He didn't even order any tests or examine me at all. I think it's time for a new rheumatologist. I googled and there's one with his own website who appears to ask all the right questions and who lectures at 3 major universities and funds a research institute into autoimmune disease as well. I think I may call him to see how long before I can get an appointment with him.

      I don't know much about fibro - I knew nothing about it before the rheumatologist diagnosed it (then later told us that he never said that despite three other doctors having his diagnosis in writing via a letter he sent them!) but if it affects tissue and there's nothing showing up in any scans or the gastroscopy didn't find anything - surely it's the fibro then?!

      Thanks so much for your advice and wisdom!

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